The blessing of health
Until the day the pain became simply too much.
That day I went to the Emergency room.
I was sure I was dying, they took me back; watched my blood pressure and my heart, they saw I couldn’t move without help, that every breath made me cry.
My husband was frightened, frankly so was I. I hurt so much I couldn’t think.
I was admitted and told they thought I had gall stones so they wanted to do a scan to see.
I think I would have agreed to them doing anything they wanted at that point.
I couldn’t live that way.
They did blood work, my everything was wrong, the results were off, a little high or a little low but not wrong enough to point to anything.
Like all of my previous blood work. Just off enough to be odd but not off enough to be obvious.
They did a scan of my gall bladder and it too was just enough off that it could be the cause, so they to it out.
I still hurt, in fact I hurt more.
They scoped, poked, prodded and then sent me home. With pain meds, and no real diagnosis.
I tried and tried to feel better, soon I notice a correlation, I would eat and feel worse. Slowly I stopped eating, I would eat just enough to stave off migraines which had become an almost daily issue, then stop, I drank water and nothing else.
I went on like this for several months. I still didn’t feel great but I felt less like I was going to die.
One other strange thing.. I didn’t loose any weight.. None.. Not a single pound even though I ate less than 500 calories a day.
I continued to try and find a doctor that would listen. Then one day a friend on an email mailing list ask for prayers. She was where I was a few months before. She was in the hospital, so many of our symptoms were the same, however she found a doctor that listened, and her tests were a little more obvious than mine, she had celiac disease.
This was my turning point, she inspired me to research on my own.
Reading page after page on celiac disease I saw each and every symptom.
Even the weird rash that the doctors had told me was eczema, but again wasn’t quite the same.
I returned to the doctor who had done my scope, she went through her notes and said maybe, but it wasn’t obvious. <sigh> another dead end. I didn’t give up though.. Instead I decided to just try the treatment for celiac, since all it was was a diet change.
I am a good cook and a foodie, this I could do!
I did research (a feat since I had so much trouble thinking because of the brain fog), learned about the flours, learned where gluten hid, and bought a few things to try.
Then I celebrated one last holiday season with gluten then took the plunge.
I am so glad I did.
I felt better right away. Not all my symptoms were gone but I really did feel better.
Within days I could think, the cane that had become part of my wardrobe was forgotten.
Slowly, after years of being sick, I started to feel well again.
This was when the only test for celiac was that scope.
I returned to the same doctor that said that test was “not conclusive” but we talked about my diet, she admitted she had seen a little flattening of the villi it was then decided that we would call it celiac.
I didn’t need the diagnosis but it was nice to know it wasn’t in my head.
Today, more than 5 years later, unless I accidentally ingest gluten I feel well 90% of the time.
However when I get glutened, I still get really sick. It can take days or weeks to get it out of my system.
Something as simple as someone being careless and just touching my food with hands that touched wheat, can cause stomach cramps, vomiting, migraines, joint pain, tingling in my hands and feet, migraines, then the brain fog that takes over, it make it so every thought has to fight to get out..(that must be what it feels like to be male, hehe)
Every now and then I feel brave enough to play Russian roulette and eat out.
I often regret it.
There was one time at a popular chain restaurant when I order a simple steak and baked potato, with just a salad. I ordered off their gluten free menu, when I ordered I took the time to explain to the server no wheat can touch anything. The salad came with croutons when I asked that the salad be made in a new clean bowl it came back with crumbs on it.. After the 3rd time.. I asked for the manage who then made it herself.
The steak had TOAST on top.. When I asked if the server knew what gluten free meant.. He said yes.. He took it back and the manager came out with the next plate.
Before you ask, I still got glutened that day.
Every time I go out I am worried what will happen this time, I attempt to educate each server about what celiac is and why I can’t have gluten.
Sometimes they care, often they just don’t.
Too many times I have been made to feel like that problem customer. You know the one, she ordered that orders one thing and has to have it just so, and wants to substitute each item until it is a whole different dish.
When I find a restaurant who does get it, a place that doesn’t make me sick, I keep going.
I will tell every one I know how wonderful they are.
There is a pizza place near me that I adore, the owner’s daughter has celiac, it is one place I have never gotten sick.
A bonus? The food is awesome!
Even a place that has not glutened me before is not always safe, there is a bbq place less than 5 minutes from my house. I eat their food about once a month (meat only, I make my own sides and sauce.) We request they wipe everything, change gloves ect.. and still I get sick sometimes.
When I get sick, like today, I am reminded that my health is hard earned, that each day pain free is a blessing I should never take for granted.
I know I am blessed in that I found an answer, the doctors failed me for years. I found the answer because I have so much to live for.
My amazing kids are worth getting up for each day, even when things are hard, when Zach stims and chews everything in sight. When the oldest won’t come out of his room, or Mike never calls home unless he wants money. Even when the teens fight with all day long.
It is a blessing to still be here and to have such amazing people in my life to share the ups and downs with, people like you.
Now someone tell me that the leftover pizza in the fridge, is not good as a late night snack even if it is yummy!
Happy Monday now go take on the day!
p.s. the EMT Minion is from Pintrest, I don’t know who made it and would gladly credit them, it is awesome.